The AE Alliance blog endeavors to educate, inspire hope and build a community among patients, families and caregivers. This blog is written for families, patients, caregivers and anyone interested in learning more about autoimmune encephalitis.
With Rare Disease Day coming up tomorrow, it is important to remember all the ways the medical field can help those who are suffering from rare illnesses. The collection and sharing of data, along with new advancements in technology are helping to break through barriers of rare diseases. Better patient care is ultimately a must, …
I was diagnosed with LGI1 Autoimmune Encephalitis (AE) in February 2018. Encephalitis is a devastating brain disease that affects about 500,000 people worldwide. The type that I have is called LGI1 Autoimmune Encephalitis – it is extremely rare and known to affect about 0.83 people in a million. With Autoimmune Encephalitis the body starts …
I am an autoimmune neurologist at the Icahn School of Medicine at Mount Sinai in New York City who cares for children and adults with encephalitis. My interest in this field stems from the first patient I saw on my first day of neurology training. He was a three-year-old boy who presented with changes in …
For World Encephalitis Day 2019, Dr. Irani talks about his work and research and how he sees the field of AE evolving. Dr. Sarosh Irani is an Associate Professor, Honorary Consultant Neurologist and Wellcome Trust Intermediate Fellow with clinical and laboratory interests in the field of autoantibody-mediated diseases of the central nervous system. He sees …
It was almost exactly ten years ago that I rushed home from a coffee shop, paranoid and terrified, and my journey with autoimmune encephalitis began. A college sophomore, I ended up in the ER and then a psychiatric ward, eventually “diagnosed” with Psychosis: Unknown. There have been a lot of unknowns along the way. My …
For World Encephalitis Day 2019, Dr. Muscal talks about his work and research and how he sees the field of AE evolving. Dr. Eyal Muscal is a pediatric rheumatologist at Texas Children’s Hospital with a MS Degree in Clinical Research whose activities include patient care, fellowship education, quality improvement, and clinical research. He is the Childhood …
For World Encephalitis Day 2019, Dr. Gallentine talks about his work and research and how he sees the field of AE evolving. Dr. William Gallentine is a pediatric neuroligst at Stanford University in Palo Alto CA. His research interests focus on the role of inflammation and genetics in the development of epilepsy, and the overlap between …
My name is Tori Calaunan and I was diagnosed with anti-NMDA receptor encephalitis in the summer of 2018. Before that time, I was a perfectly healthy 24-year-old. I was going through life, had a job that I loved and was in nursing school. In April 2018 I was feeling a bit weird. My right leg …
Seventeen days till World Encephalitis Day. Let’s all raise awareness for Autoimmune Encephalitis, because it is still too often people with AE go undiagnosed or misdiagnosed. The AE Alliance has created an infographic to make it easy to spread AE awareness. You can print it and hand it out to your friends, neighbors and coworkers. …
It has become apparent over the course of time in studies of autoimmune encephalitis that unfortunately some patients go on to develop epilepsy. It is a minority, but occurs in a significant percentage of patients. A new publication just out from two centers in Rome, Italy reported results from a retrospective study conducted on adult …
